My 6 year old daughter was just diagnosed with celiac based on blood tests (her endocrinologist suggested it as she has a thyroid disorder). She is symptom free - her growth has been on target since birth (she's 50% height/weight), no problems eating/digesting/pooping, no behavior problems, no development problems (she's extremly smart and outgoing).

So the gastro dr is going to repeat the tests just to be sure, but after that wants to start her on a gluten-free diet. I kind of feel "why rock the boat". Why should we change her diet if she's doing OK? I feel like if we do change her diet and she gets used to eating gluten-free, then when she does ingest gluten, it will reak havoc on her system as it won't be used to it...almost like a trigger.

My mom had celiac as a child and "grew out of it". She has been eating normally for 65 years and no problems...why can't I do this for my daughter and if she does develop any issues then put her on the gluten-free diet?

should we have an endoscopy to be sure? I don't want to have to put her thru that either unless necessary.

Please don't peg me as a bad mom...I make sure she eats very healthy, she's only about 1 "sugar" a day, I water down her juice, she only eats whole wheat foods, eats several fruits and veggies a day and her favorite meal is salmon with spinach...can't say that for many 6 year olds. I just don't want to put her on a special diet if its not necessary as I feel like she'll miss out on so much of a childhood (b-day parties, mcdonalds, pizza night, etc..)

Celiac disease is an auto-immune disorder. She may not have the classic symptoms, but thyroid problems can be a symptom - that's why she was tested.

A recent study has shown that celiac sufferers who don't follow a 100% gluten free diet have a lower life expectancy than those that do. And it's no longer believed that you grow out of celiac disease. This is a myth.

My 6 year old daughter was just diagnosed with celiac based on blood tests (her endocrinologist suggested it as she has a thyroid disorder). She is symptom free - her growth has been on target since birth (she's 50% height/weight), no problems eating/digesting/pooping, no behavior problems, no development problems (she's extremly smart and outgoing).

She is not symptom free, you took her to a dr for a reason. You listed about 5 symptoms there but there are over 200 related to this disease.


So the gastro dr is going to repeat the tests just to be sure, but after that wants to start her on a gluten-free diet. I kind of feel "why rock the boat". Why should we change her diet if she's doing OK? I feel like if we do change her diet and she gets used to eating gluten-free, then when she does ingest gluten, it will reak havoc on her system as it won't be used to it...almost like a trigger.

If she's not sensitive to gluten, a gluten-free diet won't cause her to be. Just like when I eat pumpkin only in the fall. I don't react to it even though I haven't eaten it for 9 months. The reason to rock the boat is to prevent further conditions that may or may not be cured by diet. A thyroid disorder in a 6 year old is a pretty serious development.


My mom had celiac as a child and "grew out of it". She has been eating normally for 65 years and no problems...why can't I do this for my daughter and if she does develop any issues then put her on the gluten-free diet?


I can't answer that for your Mother but there is no current information that anyone outgrows true celiac disease. Your daughter has a different set of genes and she deserves your best care, in case her systems won't react the same.


should we have an endoscopy to be sure? I don't want to have to put her thru that either unless necessary.

You're dr can request an endoscopy if you want it. It's not hard or difficult.


Please don't peg me as a bad mom...I make sure she eats very healthy, she's only about 1 "sugar" a day, I water down her juice, she only eats whole wheat foods, eats several fruits and veggies a day and her favorite meal is salmon with spinach...can't say that for many 6 year olds.

You're not a bad mom, you're a great mom. You came here and asked your questions even though you felt someone might put you down. You took your daughter to the best dr you could and even though you question the results, you are trying to face what you have to do. It's hard to have a little one with health issues.

I just don't want to put her on a special diet if its not necessary as I feel like she'll miss out on so much of a childhood (b-day parties, mcdonalds, pizza night, etc..)

I can understand your feelings but she will not miss out on anything, she will just eat the foods in a different way. Her friendships will be there as they are not dependent on food. A good read is "Living with Celiac Disease for Dummies". The first part of the book tells how she dealt with her child's celiac disease and his attitudes about it as he grew. It might set your mind at ease.

Just hang in there, read all you can, and find your inner strength. Your child looks to you for guidance so be ready for whatever you have to face together. Keep asking questions here as you need to. We're always here for you.

My father had no symptoms until he was age 60. In fact we did not know he had Celiac until they diagnosed it after his death due to many auto-immune complications at age 61!

I was diagnosed at age 50 though I have no symptoms other than very slight anemia. However considering my dad's story, I take a gluten-free diet very seriously. I don't wish to frighten you, but I wanted to emphasize the importance of staying gluten-free.

DougE

My husband was diagnosed with celiac disease as a baby (now, this is forty-seven years ago, so the diagnostic tool was dietary response - - horrific bloating, diarrhea and non-stop fussing after eating wheat pablum and cereal). Way back then it was commonly believed that one could "grow out of" this autoimmune disorder. He was put back on gluten-containing foods as a toddler, showed no obvious symptoms, and therefore he was considered "over it".

I met him when he was in his early twenties, and he was a guy with a fair amount of gas and mild GI issues, something he felt all guys have. Long story short, his symptoms of a gluten problem hadsimply been waxing and waning; for a few years there was nothing noticeable, but as modern medicine fully recognises now, the illness does not go away. Why the symptoms may abate for a number of years, no one seems to know for sure.

Having no obvious symptoms is also no indicator that a gluten problem isn't there. I was a "silent celiac" - - I had no symptoms when I was diagnosed with the exception of borderline low iron.

If your daughter reacts to gluten after having been off it for a while, all the more reason to believe that she is, at the very least, intolerant to it. After I was gluten-free for a month or so, I accidentally ingested wheat and oh boy.....there were all the classic gastrointestinal symptoms I kept hearing about.

You've come to the right place. A big welcome to you!

Great post!

I'd say definitely get her on a gluten-free diet.

I didn't find out I had Celiacs until recently but EVERY issue I've had is explained by it and responding to gluten-free. Gluten intolerance can cause a host of problems like brian-fog, not focusing well, anxiety, depression...your daughter may have symptoms that she can't articulate. She may also develop symptoms and not know it is Celiac related. I showed signs as a child but was so "normal" and "healthy" I was never tested. I wish I were diagnosed and gluten-free as a child. It would have helped in so many ways and would have prevented the stuff I now deal with as an adult becasue I waited so long before going gluten-free.

There are so many issues for Celiacs and it can be worse for those of us who are symptom-free because we can develop issues that can kill us and we don't know they are coming because we feel fine.

It will be easier for your daughter in the long run, for so many reasons, if you show her how to care for herself before she has any symptoms. It is a smart and loving investment in her future.

Plus, gluten intolerance (including Celiacs) is genetic. You may have it, too, and simply not be showing it. Gluten-free is healthy for everyone.

There is a book called "Healthier Without Wheat" that talks a lot about kids. You might want to check it out.

Celiacs can be triggered and become active at any time. Usually when you have bad enough symptoms to finally see a doctor you are well into the disease and the damage takes longer to reverse. I don't mean to scare you. I just know that it is a dangerous condition and your daughter is lucky it was discovered at such a young age because she has the possiility of never getting sick from it.

Best wishes to you. And kudos to you for reaching out.